A permanent emergency: a longitudinal study on families coping with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that has a strong impact on the lives of the people affected and on their close relatives, who have to tackle the demanding duties of caring for and assisting them. Family life can be profoundly influenced by this disease, and evaluating how the relevant parameters of family functioning relate to the markers of psychological adjustment of patients and caregivers is an important research objective, with implications for clinical practice. We examined the associations of family cohesion and adaptability (FACES III) with patients' coping strategies (MND Coping Scale) and caregivers' burden (CBI) in a longitudinal study with a sample of 19 pairs of patients with ALS and primary caregivers. The results showed a tendency toward patterns of extreme family functioning, with increasing levels of cohesion and adaptability, especially in the ideal versions of family functioning. Such high levels of cohesion and adaptability were correlated with positive markers of adjustment, especially in terms of the adaptive coping strategies of patients. Increasing and extreme levels of both cohesion and adaptability seem to be expected and even adaptive in the case of a progressive and impairing disease like ALS. Methodological concerns regarding the operationalization of family functioning constructs are also discussed.